Hi I have my MRI results- clear except for sinus infection. The disappointing news is that my primary doctor who ordered these tests, the cat scan and the MRI does not want to go further with the EEG. She doesnt want to run it. Even though she has seen the myclonic sz. or body spasms?- so Im a bit discouraged, from all Ive read mris are often negative. I guess Im going to have to wait til I have my 6th sz and then pursue this with her again.I dont know how to say it, but I really think that I am having seizures I have had spasms from rsd for 4 years, there is a big difference from what I am experiencing now. So whether it is sleep apnea, sleep paralysis, or some type of sz, I am stuck right now. Then again, you have so many many problems with RSD- perhaps it is just another manifestation of that. Its easy to become obessive with this disorder(RSD), and I dont want to be doing that. So I am thinking I will just wait and see how things continue to unfold. Thanks for all of your help. If anything changes Ill let you know. Sincerely, CZ

Hi CZ,
I'm sorry to hear that your Dr. will not do an e.e.g. I find that very strange. Since you are the patient and you are the one paying the medical bills you have every right to request that an e.e.g. or MEG be done to find out what's going on. I've had disagreements with neuros in the past and all I've had to say is that I would call the Medical Conduct Board and then they change there mind and do the tests only to find out I was right. You have every legal right to request the e.e.g. be done. You might want to call the Epilepsy Foundation of America to get more detail of your rights. 1-800-332-1000. Here's wishing you well and May God Bless You!

Sue

Hello my name is Jules2 and I am also new to this site. My wife of 14 years has just been diagnosed with left temporal focal seizures, in March 2008.

BTW we are both nurses, she is a Pedi ICU nurse and I am a Neuro nurse. A few months before she was diagnosed I noticed that she would suddenly make certain statements when trying to speak to me. For example, if she was trying to point to my shoes, she would say "those are your people" or she uses the word "person" a lot. At first we would laugh about it and dismiss it. I started noticing that she was doing it more frequently, so being the neuro nurse that I am, I began to get very worried. To make a long story short she had an MRI, EEG, Lumbar Puncture performed and nothing was detected except for the fact that she was having a lot of seizure activity in her left temporal area.

Her neurologist started her on Lamictal and currently she is on 200mg twice a day. The problem is that she has the episodes about every 2 weeks. And to top it off we just found out we are pregnant (6 weeks)......breathe.

This morning she woke up and immediately started to experience the focal seizures, mind you it is only speech. She has never had a grand mal seizure (thank God). We both became worried and I called our Neurologist (good friend of ours) and she asked that I give her the Klonopin we keep handy for these situations. The Klonopin makes her very sleepy but it seems to control it. She said it is probably the hormones from the pregnancy ( i hope that is what it is).

I hate this and it makes me sad, scared and frustrated because the medication obviously is not controlling it. My wife is "Chatty Kathy" and the nucleus of our family. We have an 8 year old daughter. I miss her keeping us all in line and running this household. I miss my wife and I want her back.

I dont know what to do and hope that someone her can shed some light on our situation. I have dealt with epileptic patients for over 17 years as a neuro nurse and I DO NOT want my wife living with this problem and much less having grand mal seizures.

Please shed some light on this sitaution to help me cope better to be there for my wife. I can't even imagine how scared she must feel.

Thank you,
Jules2

You have got a bunch of good info..

Sincerely
shawn33

Hi there,
The MRI that i had at the start was no good either. That didn't show my epileptologist what the cause of my seizures were. But after the cut me open, and looked at my brain since i went in for the surgery to have the right temporal lobe removed. They were able to see then that I was having them because of scar tissue there. I also have scar tissue on the left temporal lobe, and that can't be touched in a surgery since my right side was removed. As for the MRI, it helps most but not all. Nothing is perfect.
Sincerely
shawn33
P.S. but it sounds like your doctor is a real pain. I wonder if you should start seeing another one that will be more helpful.